Week Off!

My prayers were answered. We get a week off. We all needed that, including Presley! We went to clinic today not knowing her ANC but on Monday it was 500. So it was a close call.  Presley was NPO (no food since midnight)! She was scheduled for an LP if she made counts. It was a long wait today in clinic. UGH with a hungry 3 year old. She didn't eat until about 12:30. We talked to the doctor shortly and her final ANC still had not come back. But the preliminary was 400. I'm so glad we get this week off. Her little body was hit hard the last 8 weeks. Here are a few pictures today! Everyone loved Presley outfit of course. It was designed by Millie! Presley would tell all the nurses, "look I'm wearing Millie's outfit!"  Doctor Fluchel really loved the outfit. I know the nurses and docs have seen that shirt floating around a lot lately but Presley finally told them...It's Millie's shirt! And everyone at clinic knows and loves Millie. What an honor. I'm sure that Millie has been in Room 6 before with mommy waiting to talk to the doctor.

Daddy the Nurse

Big shout out to Daddy! We have the best daddy. He jumps in with both feet. He's deathly afraid of needles, you would never guess. He has said with tears that he is going to sign up to donate blood. This is a big deal, just ask his brothers how much he hates needles. I don't know what we would do without him home. For 21 days he was the nurse. He woke up every night and would administer antibiotics with the light of his cell phone, just to keep Presley asleep. He would have to wait for 30 min for the antibiotics to drip and then flush her port! He would always make sure for blood return. I think Presley likes daddy as her nurse. Daddy would order new medications when we were out. He even deaccessed when we needed to change the port or if it wasn't working. He's a pro! I can do it and understand it but daddy is the pro. Thanks Daddy, you are the best!

Sleeping baby getting her antibiotics

"Be soft Daddy!"

Antibiotics

21 days, 3 times a day, every 8 hours, 63 bulbs of antibiotics, 63 flushes of heparin, 126 saline flushes, setting an alarm at 12am to give last dose of the day, 21 days of a needle stuck in her chest, no real bath in 21 days. We are ready to be done with this! Tomorrow Presley will have another CBC (blood test) to  see if her ANC will finally be 500 or above. We use to take bets on what her ANC was...we are over that. Every time she has had a CBC since we left the hospital the results...200! Some improvement would give us hope of getting to end of this craziness. Doc. Fluchel said if we got to Monday and still under 500...we will do something different!  Like maybe an oral antibiotic would be nice. But I never get to excited until it happens! I almost don't want to know what the results are..disappointment is hard to take theses days. All this for a UTI. Nothing is simple anymore. 

63 of these bulbs of antibiotics! When she sees daddy coming she is like...really again!

These are the supplies needed for each every antibiotic. 

Look at me...21 days. It's been changed due to the port/needle not flushing and for infection risk but that a long time for that darn sticker and needle to be on my chest.  But I feel proud when I see her riding that bike and tubies hanging out. I want to yell.....Take THAT Cancer!

Siemens/PCMC Golf Tournament

Today we drove to a golf course near beautiful Park City, Utah (30 mins from us!) to share our story and say thank you to the many people who donated to Primary Children's Medical Center (just heard the news that they changed their name back to Primary Children's Hospital!) So PCH! Siemens hosts a golf tournament every year for their vendors. In lieu of a registration fee, the company invites their vendors to make a donation to Primary Children’s. Today they raised about $6,500 

Paul shared our story and our experiences with PCH. Of course we were both crying while he is trying to deliver a short speech. It's very difficult to talk about our story and not tear up. We have not experienced any other Children's Hospitals but know in our hearts that Presley is where she is at for a reason. We Love Primary Children's. We feel confidence in her doctors and nurses. The child Life Specialists have been great. I have never felt that Presley's care was not good enough. The doctors and nurses treat Presley with so much love and kindness. What's best for her always comes first. 

We had a fun afternoon, riding Strider bikes and letting the kids enjoy a little freedom. We had a yummy lunch and then gave his three minute talk then the Golf Course lent us a golf cart to ride around the course. The kids had fun doing some putting, we even saw a few moose in the trees. 

Ensign Peak

We took the kids on a hike! I know...something not cancer related. Big moment over here. Our lives seem so overloaded with cancer and Presley's care. We packed them up and of course they were thrilled because we finally pulled out the kids Camelbaks. Tonight felt good. Crew needs to get out and feel the dirt and run wild! He's a great little hiker! He's two and has missed so many experiences lately. I often think about what I'm always telling the kid, Don't touch that, stop doing that etc. No we can't go to the park. Clean your hands. Get in the car we can't be here, don't get your tubies wet, here open your hands for some Av-Guard (hand sanitizer).  Presley was a trooper but was worn out pretty quick. Her red blood cells are low, along with the rest of the components that make up blood. When we got to the top of Ensign Peak, just in time to look out. I looked at her shivering. No one else was cold but her blood levels were low. So again...QUICK! lets get down off this hill. Its been hard to relax and enjoy life. Always worried and paranoid. Thanks Cancer. Tonight I could feel fall in the air. I usually love this time of year but lately I have been really depressed about fall coming. I want summer to be what it was last year. Swimming and no cares in the world. Just two cute babies and no worries weighting me down. I usually don't even know what day or month I'm in. I feel stuck in March. The world really feels as though it is moving on without me. But for this season I must embrace that. Everyone is moving forward including the days and months. I feel like I haven't moved a day. Tonight felt good. No one stopped us to ask our story (I really do love sharing the story but its exhausting at times). It would been a perfect night if Presley could have had the energy to climb that hill like brother and not having a needle stuck in her chest. She has had that darn needle in for almost a month :(
Fresh fall air, kids getting out, not at a cancer event, we need more of this!

grandma

The kids were so excited to ride bikes with Grandma

We have a cool daddy!

Check out my new tricks! Take That Cancer!

Superman!

Grandma came to visit. We have needed the help! Thanks Grandma for loving, playing and helping!

imagine -6 months ago

I have tried and tried to write about the last 6 months of my life. I can't. I can have you imagine with me, what it would be like. March 12, 2013, a day I will never forget. 6 months ago I held a very sick baby and was terrified. Stepping into the unknown is scary. A tiny child has taught me what it means to be brave, strong and to keep smiling. 

I often hear the words..."I can't imagine!' 

We are on a journey we never imagined either. 

We lived in a state of ignorance, we know live in a harsh reality.  

For now, imagine with me... 

Imagine the unknown & terror

Imagine being told your child is seriously ill.

Imagine crying until you think there is noting left.

Imagine signing a consent form knowing that death is an option.

Imagine handing your screaming child to a surgeon and waiting.

Imagine watching your child no long have the strength to walk.

Imagine pushing poison into your daughter.

Imagine holding your baby countless times while someone puts a needle in them as she cries.

Imagine playing with your daughters hair as it is falling out, and then having to shave it bald.

Imagine the guilt

Imagine being told the percentage chance that your child might survive.

Imagine holding back the tears when your other child is carried away from you screaming and not understanding why you are leaving him again.

Imagine the loneliness

Imagine not being able to leave the house for fear of infection

Imagine not being able to make any plans apart from hospital and clinic visits.

Imagine being stuck in isolation and not seeing anyone for days.

Imagine becoming a nurse and learning new words which is all you talk about anymore.

Imagine good friends being too uncomfortable to see you or speak to you anymore.

Imagine strangers staring and making comments about your daughter.

Also imagine the hope

Imagine the kindness you feel from people you don't know.

Imagine the support system from people you've never met but know how it feels.

Imagine the magic of each smile knowing that this smile was lost for weeks and is not back.

Imagine how fragile and precious life feels.

Imagine the fear and anxiety

Imagine not knowing if your child will make it or not

Imagine the nightmares I live with

Imagine each blood test wanting to hear those words no sign of disease

Last pill for Delayed Intensification

I feel like singing at the top of my lungs Hallelujah! It's been a long rough phase of chemo for Presley. We are so glad to see this phase end. It's late as we are having port issues again. Ugh. The home health nurse got about 3/4 of does of TPA (anticoagulant) in her port to see if it can't brake up a blood clot that might be causing the issues. We all finally decided to de-access and re-access again. Poor Presley. Her skin is so sensitive. Her little port is so tender from all the accessing and de-accessing. Tonight's port access was no fun. We could not wait to put the EMLA (numbing cream) as it take at least 30 minutes to work. We needed to get her port to flush and rule out if the port was being positional. Sure enough when we took the port out the needle it was bent so the fluids could not pass through. Huge sigh of relief for everyone. Otherwise we would have been at clinic the next day getting x-rays trying to figure out the next steps of why the port wouldn't flush.  I should sit down and think of all the clinic visits we have had in the past 2-3 weeks, each port access (at least 15), all the phone calls to clinic and to the on call oncologist. My head is spinning. We are all going to be so glad when we get a little bit of a break. I really do not know what I would do without Paul home. I know he'd rather be at work providing for us, but having him home has been such a blessing in all of our lives. I've teased him for the last 3.5 years that he didn't understand what it was like to be mother, I know that he knows the daily struggles and tasks a mother takes on and has much more sympathy for not only me but other moms. He would have basically needed the last 2 weeks off to be with Crew. When the doctors told us this was going to be the hardest 6-9 months of your life, they were not lying. We try to smile, stay positive and laugh. I often look at all the pictures and reflect on the blog posts, life is really not what is portrayed on this blog. Her numbers have been too low so we have to stay home. We need a change of scenery. With tonight being her last chemo pill of this phase. We will just need her ANC to recover from all this chemo. Her poor body has been hit so hard. She is strong, brave little girl. She still smiles, plays, rides her bike better than kids who don't have cancer, and never feels sorry for herself. At the beginning it was just her with dark circles under her eyes, now we all have them. I don't know how we are all surviving on such little sleep. So we will get a little bit of a break before we start the next phase. A week or so, but it really won't feel like a break until she is off her IV antibiotic. Being the nurse, advocate, mother, maid...its a tough task. Then trying to make sure Crew is getting what he needs emotionally. Having two young kids is hard enough without leukemia. Blood work every Monday and Thursday until her ANC of 500! The next phase is called Intermittent Maintenance 2- This phase is like the IM 1! We are glad we are back to a chemo we are use to and know the symptoms we will have to deal with but know she will be going into the phase a little more tired that usual. Fight hard little girl, don't let the chemo get you down. Auntie Lou was here this weekend. So thankful for her help! Grandma is coming tomorrow. We need the help with cooking, cleaning, and just daily tasks. With two parents at home and we still can't keep up but sure are giving it our all. After all, it is our sweet princess we're ultimately fighting for.
GOODBYE and GOOD RIDDANCE  Red devil, cytoxin, ara-c, 6-TG, STEROIDS these are just a few of the nasty chemo's. WE will not miss you and hope we will NEVER meet again.

Last Chemo pill for DI! It was a big moment!

TPA..an attempt to get Presley port to flush.

Platelets and Port

We got released from the hospital Friday morning...knowing that soon Presley would need platelets. Her platelets were dropping about 20 ppm a day while at the hospital. We made it through the weekend! The home health nurse came to do a CBC (blood work) so we could see where her ANC and platelets were. Well...she couldn't get the port to flush. Oh great! It just seems these days everything is going wrong. We kinda knew that was going to happen! Doc's kept telling us to expect at least one hospital stay during this phase. Home health nurse de-accessed Presley so we could re-access hoping this would solve the faulty port needle unable to flush. A few things could be happening when a port does not want to flush or get blood return. It could be that the needle is hitting up against something so stopping the flow (positional) or that a blood clot has formed (this is why we are always flushing with heparin), or the port itself has moved or is not working.
So I called clinic they ended up just having me bring Presley in for two reasons. First to figure out the port issue and to get blood work done faster because of all of her bruising.

Kristin was able to flush the port by re-accessing it. (phew that was a relief)! We got the results back and her platelets were at 7, normally they transfuse at 23. Yikes! It was a good thing for no bloody noses. So we stayed at clinic waiting for platelets! Presley was given 1 unit of platelets. As with any blood product it comes with the risk of allergic reaction from the transfusion. So they check her vitals every 15 min and make sure her body is handing the platelets. It was not a very busy at clinic today. The nurses were playing and having fun with Presley. Have I told you how much we love the clinic nurses? They are so sweet to Presley. She loves to play and talk with the nurses. Presley had a ton of energy at clinic today. We always love to see her with energy!
I'm so thankful for that donor that donated blood..and filtered for platelets. I always look at the donor bag and wish I could thank them personally for being willing to donate life!
Our trials, heartache, and stress are softened from all the many blessings we have and see. I know that the Lord does not take without giving back. We are so thankful for those blessings.

Presley got a box, daddy brought it to clinic to open!

Presley and Kristin- We love Krsitin

Presley getting Kelly's vitals. We love Kelly!

Presley got a new super hero cape "Be Bold Grow Gold" 

Lets get out of here!

We made it! Fever free for more than 24 hours. We are GOING HOME! WHOO. Presley will stay on an IV antibiotic 3x a day until her ANC is above 500. About a week or more. She will stay accessed with her port needle and dressing on. We painted Elliot's nails GOLD today and Joe (Elliot's owner) gave me a "Cancer Fears Me" tattoo. Presley was packed and ready to Stride out of the hospital. She is feeling better but a UTI (urinary track infection) and a low ANC (neutropenic) she will need to stay on a antibiotic. SASH! Saline, Antibiotic, Saline, Heparin! Excited to go home!

Elliot let me paint his toes gold!

Elliot also gave me a tattoo to wear and nurse Aubrey (from clinic) came to visit!  Presley loves those visitors

She was ready hours before they let her go! Backpack, Strider and magic shoes. Ready to bust our of this place.

We even got to see the princesses on our way out! 

Utah Cancer Cuties

I am part of a support group on Facebook here in Utah called "Utah Moms with Cancer Fighting Cuties". It is not a group you want to be part of but if you have to then it's amazing group. These moms and cancer cuties have become near and dear to our hearts. How can we battle this fight alone, how can we not worry about  each others cancer cuties? A group picture was organized. Presley's ANC is 0. I thought about not letting her go but decided this is something we couldn't miss. The other cuties in the pictures are holding up framed pictures of kids that could not make it or have earned their angel wings. These are the pictures of strong, brave kids and not even a fraction of all the kids in Utah fighting cancer of all kinds. Each child's shirt has their diagnoses on it. For Presley she is wearing the  ALL (Acute Lymphoblastic Leukemia) shirt! 

Special picture to me. Holding her mask, smiling, wearing her gold ALL, HFP braclet and headband supporting orange leukema, tubies hanging out, magic PNF shoes, Bald and no eyelashes left! This is a true fighter! 

Day 2 -Inpatient

Today was a special day. My heart is still smiling. We spent the day in the hospital with a 3-year old that just got a blood transfusion. Mama is tired. Presley has had so much energy, and keeping her entertained in a hospital room is a hard task. I kept joking that I was going to call Doc Fluchel and have him come look at her! The nurses even wondered why she was still at the hospital! The protocol is that you have to stay for  24 hours after the last indicated fever. Each night her fever would show up and then be gone during the day. UGH, another day we stay. Today, Presley was able to put together her "Beads of Courage". In her little mind she does not understand what each bead represents but someday will and learn of the hardships she once bore. We didn't start the necklace from the beginning because it was just too much. But we are almost 6 months in and thought it might be a good project to do while at the hospital. Hillary (child life specialist) helps us collect all the beads that show Presley's cancer journey thus far. Each bead represents something hard Presley has done. The yellow bead I'm holding in my hand in the pictures before is my favorite bead. This bead is the "remission bead" She earned this bead on day 29 after diagnosis. Remission, no more traceable amounts of leukemia. That was a day we jumped for joy. Presley said her favorite bead was the pink and purple bear.....I really think those are the worse beads. Those are for the 2 rounds of steroids she has completed. UGH. She earned those beads. I love the bead she eared for going bald and the bead for getting her port placed in her chest. Stringing these beads today was a walk down memory lane. I cried. These beads mean so much to me...I know these will go in a shadow box one day. Holy moly has she had to endure a lot of port accesses, clinic visits and so much more. They are out of the chemo beads so her necklace will double in size when we get those.  Presley also had a special delivery, Shoe Fairies! We have been waiting or her shoes and today was the perfect day to give us a distraction for the hospital stay. Madison (founder and President) of a Peaches Neet Feet did the artwork on Presley's shoes. We are secretly hoping Madison would do the shoe designer. We could have had a Disney Princess or Hello Kitty. But was wanted someone more unique. Madison drew a princess castle, Heart Breaker super power, Ice cream and an ice cream truck and of course the hash tag #hopeforPRESLEY! Presley loves to spell her name and when the nurses check her bracket to give her medication she always spells it out. She was so excited to see her name on those shoes. They are pink with GOLD accents and have the famous Peach! We are in love. They couldn't have been any cuter!  This time around its not RSV season so brother has been able to come and visit. It makes for craziness but everything is right in the world when the kids are together. Crew wakes up in the morning asking for Dede (sister). Presley endures physical pain, Crew endures emotional pain from all this.
Presley's ANC is at 0 so she has no immune system or cells to fight an sicknesses.
Here are a few pictures from today!

Cancer Sucks! Thanks Joe and Elliot for the new bling!

Bald bead, remission bead and Presley getting the letters to her name

That's one long necklace represents a lot of brave times for our little fighter. 

Playing with Faith!

Elliot and Joe came to visit. We love when they knock on the door!

Something captured in this pictures that I adore can't put my finger on it.

This girl does a lot of painting!

Carrots and ranch were her favorite this trip. The carrots are shreeded so tiny because she is under 4.  

Entertaining this 3 year old in this room is exhausting.

Getting her new shoes today! Still smiling!

Brother got to spend the evening with us. I think the nurses were glad when we went to bed! I love Crew in this pic!

Nana sent a special package to Crew for his party. He was so excited. It was the perfect timing. Presley got her shoes and Crew got spoiled from Nana, Papa, Cousin Jerry, Jen-Jen, Wendi and family. We LOVE you guys!

Our little aviator!